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Comment by chis | Hacker News Reader

These diseases that exist outside the regular medical system but nonetheless have tons of anecdotal evidence, I just don’t know how to think about em. This, long covid, chronic Lyme. It’s hard for me to believe that these illnesses do have some effective treatment like antibiotics when clinical trials are somehow unable to establish the efficacy of treatment and there isn’t even a solid explanation for why they work.

I guess the scientist in me still says that it should just be coincidence, people get better on their own and it happens to line up with a new drug they try. On the other hand if I had an illness like this I’d totally try it.

It does seem that medicine has a problem recognizing illnesses which are difficult to measure and don’t have any viable treatment options, the system isn’t really set up to diagnose things like that.

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The medical system has blindspots, and stigmas that extend even to well-documented diseases. I have EDS, which is a genetic disorder that causes loose connective tissue. One subtype (vascular EDS) is life-threatening, the others are merely painful and disabling. All but one subtype can be confirmed by gene sequencing, but the one that can't comprises the majority of cases. Most genetics departments reject all cases, except for vascular EDS. Rheumatologists usually own connective tissue disorders, but not this one because it's not autoimmune. There's no treatment other than PT and mobility aids.

It's a really bizarre situation because you can have a known-pathogenic COL5A1 mutation, dislocate your shoulders at will, and have a disorder so old that the ancient Greeks wrote about it, and still get belittled and gaslit (at worst) or passed off to a physiatrist who can prescribe you fancy splints and crutches (at best.) Largely (imo) because your disease isn't a good fit for any specialty.

Why do you think they haven't discovered better treatments? What is your ideal world for this disease?

Doctors are not able to conceive of patients as a system, because they lack the training and tools to do so.

This problem originates from science being systematic (step by step), not systemic (whole system). Both systemic and systematic approaches are required to understand reality [1].

So in an ideal world, we would have a science which looks from both the inside out perspective and the outside in. Right now - if a test doesn't measure it - it may as well not exist. That's an "inside-out" perspective.

Once the science is fixed, the medical establishment is next: medicine has become too complex for any one doctor to understand. Doctors need to work as a team, each performing a different role.

[1] "Systems Engineering: A systemic and systematic methodology for solving complex problems." Joseph Kasser, 2019. p. 17

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